“Really? You did that? They let you in?” Such was the response from a wide-eyed friend after I described my latest visit to Washington D.C. to meet with legislators for tuberous sclerosis complex research funding. Her comments reminded me of how I used to view the hallowed halls of our elected officials before I had a child with an unknown disorder that wreaks havoc with all the vital organs, causing a variety of really bad things.  Despite the fact that members of congress are elected by the people and I am indeed a person, connecting the dots between my child’s disease and lobbying for research funding never entered my mind.

That was 17 years ago. Since then, hundreds of us–doctors, parents, specialists, educators and others–come together in Washington D.C. each spring to let our voices be heard in an organized, respectful and results-driven way. The result? Well, not everyone knows about tuberous sclerosis, but we’ve moved the dial considerably from “How do I pronounce it?” to “I think I’ll support your request.” And while our initiative has far to go before we find a cure for TSC, we are indeed receiving funding for grants that will impact not only those with the disease, but others with related disorders such as epilepsy, autism, kidney disease and even cancer.

It all started with one gentleman, whose heartbreak over his twin granddaughters made him reach out to congress. More on that another time, but here’s the point of this post: Is there something you feel very strongly about? Would you like to communicate with your elected official on the matter? You won’t believe how easy it is! Consider the steps below:

1. Call the offices of your two senators and the representatives for your state, to make an appointment. (You do NOT need to go to Washington D.C. to meet with your officials. You can do it close to home.) Find out who your Senators are at www.senate.gov. In the upper right hand corner there is a menu entitled “Find Your Senator” and then select your state.  Local representatives can be identified at https://writerep.house.gov/writerep/welcome.shtml. 
2. Once you are on the page for your congressional representative, there should be information and instructions on the best way to schedule a meeting with them.  You can also call their Washington D.C. office and to speak with their scheduler.  They may ask you to email or fax the request.  If so, please ask the scheduler for the appropriate email address.
3. Expect that your visit will only be 10 or 15 minutes long.
4. To prepare for your visit, reach out to others with the same cause.  Ask them to write a letter about how the cause has affected their lives.  If possible, compile photographs. This is especially important when you are meeting with representatives from districts other than your own.
5. Don’t be disappointed if you don’t get to meet directly with your senator or representative.  Key staff are very important and can convey your message effectively (no matter how young they look).
6. Even if you are nervous, remember – you know much more about your issue than they do.
7. Tell the person, as succinctly as possible, what you are seeking .
8. Tell your personal story.  Bring the letters and photos you collected to show.
9. If you are unable to answer their questions, don’t try to fake it.  Tell them you will get back to them with a response.  This is actually a good thing because it gives you an opportunity to have even more contact later.
10. Ask for a commitment. Listen carefully to the response.
11. Bring a camera and ask to get a picture with them for your local paper.
12. If you meet with a staff member, please make sure you ask for that individual’s business card.  Make sure this card includes the staff member’s email address.  If it is not printed on the card, ask the staff member to provide it to you.
13. Send a follow-up thank you note.
14. If your local paper prints a story about your visit, send that along with another thank you note.
15. Remember, it’s all about relationships!

Our annual trek to Washington D.C. is this February 24; wish me luck! In the meantime, I wish you luck in considering causes that are worthy of your time, energy and outreach. If outreach includes government lobbying, remember it’s easy to get started. Follow the steps above and you’re on your way!